I hope everyone is doing well. I left you last time with how I was trying to cope with losing my professional identity and how I turned to my family to deal with that. When it comes to my family, I feel I was extremely fortunate in this area. At the time of my diagnosis with fibromyalgia we were stationed in Alaska; so far away from my family such as parents and siblings. It was just my husband and two foster teenage boys. My husband had been extremely supportive; in fact he encouraged me to seek help from the doctors to determine what was happening with me. He could see my changes.
He witnessed me going to bed earlier although I seldom actually slept and if I did it was not restful sleep at all. He witnessed me fight to accomplish simple tasks that before were not even an issue. Such as switching laundry over; I would move clothes from the washer to dryer and then not turn it on. That was something I seldom ever did. He at times became frustrated as I would be trying to explain things and I would struggle with finding words and/or lose track of the conversation half way through. I also lost interest with intimacy.
When my husband observed me losing interest in activities I previously enjoyed; such as hiking, camping, socializing with friends he really knew something was off. It was what I did. I was always going and doing something. I loved having friends over for a bbq or to sit around a fire and chat. I could no longer find the energy for this.
The teenage foster boys were a reward for me. They brought joy and energy to me. Although like any teen they also brought some trying situations. They had not known me for long so I’m not really sure how aware they were of what was going on with me. The older of the two, has now become a permanent member of our family and is 21. He knew I was dealing with an illness, although I don’t specifically recall telling him what it was at the time. He was active in sports and I was excited he had an opportunity to participate in them. I began to struggle with going to watch him play football and soccer. I loved watching him play. I became discouraged again with not being able to support him at these events.
As you know I retired. Shortly after retirement I returned to my home state of NY. I was close to my family again. This is where some difficulties came as it pertains to my family. My parents and siblings who all have kids of their own were aware of my fibro. But they had not seen the changes occurring. So they expected the old me to come home. The old Renee who was always going to their children’s sporting events or taking the kids on adventures; could no longer do that. I had no energy and at times was embarrassed by my inability to follow along with the stories the kids were telling me. My nieces and nephews were no longer little, they were old enough to observe this and at times ask, “Aunt Nay Nay, why do you not understand what I’m telling you?” That nearly broke my heart. I often broke planned engagements with them. I had not learned to say no just yet. I was excited to be home and see my family and the kids.
We soon all adjusted to my inability to be so active with them. Again, I feel privileged to have the support system from my family especially their understanding of the “new” me. It is a huge stress reliever.
~Renee will continue sharing her experiences living with an invisible illness over the coming weeks. Check back next Friday for the next installment in her personal journey series, “Where Did ME Go.”